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Stef

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About Stef

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  1. Thank you for all the wonderful information! I saw my Rheumatologist yesterday, and the appointment was MUCH better! I started our appointment by being very open and addressing his behavior from the last appointment...and he was genuinely apologetic! My meds were adjusted. My Prednisone was doubled to 20mg daily, I'm to remain on the Plaquenil (200mg twice daily), and will now begin taking Methotrexate once weekly (3 pills the first week, then 6 each week after). I must have labwork done every 2 weeks while on the medicine as I have some underlying Liver issues. I had a chest x-ray yesterday, as the Dr felt I may have Pleurisy. He also wants me to schedule an Echocardiogram next week to make sure everything is ok, as I've had these sharp pains in my chest and some minor swelling of my lower legs and abdomen. I was also given a prescription for a mild diuretic to help with the swelling. I should be having PFTs done sometime soon once we see whether or not the chest x-ray shows anything. Thanks, again, everyone! - Stef
  2. Hi Everyone! I had a question about pulmonary function tests (PFT's) which has been puzzling me, and wonder if anyone has an answer. I'm familiar with PFT testing (I've been asthmatic my entire life), but I'm wondering if anyone knows if PFT results in an asthmatic patient would be able to differentiate between asthmatic problems and other problems (as in scleroderma or lupus changes in the lungs)? I take two medications daily (Advair Diskus and Singulair) to help control my asthma (which is typically moderate to severe), but have had issues the last 3 to 4 months or so. I've been experiencing shortness of breath that feels different from my asthma issues, and at times have sharp pains when I breathe deeply around the left side of my chest (around my heart). I'm not running a fever (I thought of pleurisy, too!), but I can't shake the uneasy feeling I have that my lungs seem different. I had a chest x-ray in December which was clear (I actually had bronchitis and was treated at the time). I see my regular rheumatologist today (and yes, for those of you that remember, unfortunately I am stuck seeing the same doctor I wrote a post about last month detailing how bad the appointment was!). I saw the specialist in Pittsburgh, but he is to be seen on a consult basis, which means I have to find a new rheumatologist, and unfortunately, there's not many around my immediate area. I hope this doctor listens to me this time. Please let me know if anyone knows in depth information about PFT. Thanks so much! Stef
  3. TOB, Welcome! I have to say, I feel like I am living your experience! I found this forum here a short time ago, and must say it is incredible! A few months ago I was diagnosed with Systemic Lupus, but have recently been to a Scleroderma Specialist to investigate whether or not I have an "autoimmune overlap" type of disease. I did test positive for SCL 70 and have a positive ANA, but did not test positive for other Lupus-specific auto-antibodies. I have features of both Lupus and Scleroderma. The Scleroderma Specialist has retested ALL of my auto-antibodies at a "more consistent and dependable" (his words, not mine!) laboratory as there have been inconsistencies. I, too, would have Scleroderma sine Sclerosis as I lack the skin involvement. I still have at least a week to wait for the latest auto-antibody results, and hope to have more answers. I, like many others here, have not felt well for years and have been a "diagnosis in progress"! You'll find great info and support here! Stef
  4. Margaret, I know! It's horribly frustrating sometimes! Even with reputatable labs, there are still potentials for incorrect results. Auto-antibodies aren't the only lab results I've personally had "trouble" with. I went through 6 different labs and sets of tests as I had inconsistencies when my doctors tested for AMA (anti-mitrochondrial antibodies...liver related), until it was concluded 4 out of 6 tests were positive, and all positive tests showed the same level of AMA...ridiculous to have it done so many times! Hugs, Stef
  5. Hi Everyone, I wanted to post an update. I went to Pittsburgh, PA and had my appointment with Dr. Thomas Medsger yesterday. I was very pleased with how the appointment went. I was there for a total of 3 hours, and was seen by 2 doctors (one of which was Dr. Medsger). There was a very thorough history and physical taken; a complete skin exam was performed, as well as a nailfold capillary test (which confirmed Raynaud's). Unfortunately, I still don't have many answers, at least not today. Dr. Medsger and I had a lengthy conversation about lab screenings for auto-antibodies. He spoke of frustration in the rheumatology field as many auto-antibodies are measured via ELISA testing vs "the old-fashioned way" (a longer, more expensive process). His recommendation was to have all auto-antibodies retested at UPMC (which is where his clinic is located) as they use the older method of testing, to ensure the results are accurate. The good news is I do not have signs of skin thickening. I do have traits that are considered Scleroderma traits, but the doctor does not want to confirm or deny a diagnosis until the SCL 70 is repeated through his laboratory. He told me the medication I am currently taking is what he would recommend (Prednisone and Plaquenil). We discussed recent lab reports (other than auto-antibodies), and there is some concern as my CRP total (C Reactive Protein), SED rate, and C3 / C4 compliment proteins are much more highly elevated (indicative of more inflammation and possible damage in the body). He feels we may have more of an idea of what's going on when the results are in. I was very impressed with Dr. Medsger and his team, and would highly recommend his services. Hopefully, I will have more answers, soon! Stef
  6. Hi New here with 2 questions

    Gina, Hello and Welcome! I agree with all the other posts. I don't think there is anyone that doesn't struggle with fatigue or have at least some slight limitation. We understand! You've come to a wonderful place for support, and a fantastic information source as well at this site! Looking forward to your posts! -Stef
  7. New With Questions

    Cher, Welcome! I'm sorry to hear of your experience. If it helps, there are several of us here going through the same thing. It seems to take many doctor appointments, tests, and much frustration before we even start to get close to a diagnosis! Regarding hives, I didn't have an episode in which I was hospitalized for hives, but I do get them frequently. It's usually the first sign I have when I'm reacting to something, or if I'm really nervous. I've had this type of reaction all my life. I just attributed this to allergies and sensitive skin, and a lack of good immunity. Post often and let us know how you're doing, and know we're here for you! Hugs, Stef
  8. Telangiectasias (red spots)

    Jeannie, I don't know the answer, but I'm interested in finding out, too. I started with just 1 spot on my cheek near my nose, and now I have several on my tongue, on my upper arms, torso, and upper chest. The spot on my face has been there for at least 1 year, but all the others have appeared within the last 4-6 months. I wonder if there is any significance to this, and if they ever stop appearing? Stef
  9. Denial of Coverage

    Hi All! I agree. It is absolutely pathetic that insurance companies are able to be so "selective". Health insurance coverage is truly different from something like automobile insurance coverage. After all, it's not as though anyone has or had any control over whether or not an autoimmune disease occurs (vs. having much more control over something like an automobile accident, at least in most cases). I personally feel "pre-existing condition" exclusions are the newest form of discrimination. Having an illness is difficult enough, let alone fighting with insurance companies for coverage! Warm Wishes to All, Stef
  10. Hi All! Jeannie's recent post about Fibromyalgia and the responses have really got me thinking. I've been reading more articles lately (mainly on this site...which is so incredibly helpful!) about the potential role of bacterial or viral infection and the connection to autoimmune issues. I'm curious to see how many of us have had either bacteria or viral infections prior to having pronounced autoimmune issues? In my case, I was diagnosed with Lyme Disease the summer of 2004 (I live in the pine tree haven of Pennsylvania!), and have never been the same since. I had been camping that summer, and developed a fever, rash, horrible fatigue, and joint and muscle pain. I was treated for 6 weeks with 2 different antibiotics, and was considered cured. Also, although I don't remember actively having any issues, recent labs show I was exposed at some point to the Epstein Barr Virus. The rheumatologist I've been seeing said Epstein Barr exposure is extremely common throughout the population, but commented he has seen (within his own practice) that almost every single Lupus patient he has treated, and several other autoimmune patients, shows they have been infected with Epstein Barr in the past. Very Interesting! Curiously yours, Stef
  11. Fibromyalgia

    I agree! Quite an interesting topic! I was diagnosed with fibromyalgia FIRST (officially in Jan 2007), and my current (soon to be old!) rheumatologist still has this listed as one of my diagnoses (along with myositis, SLE, and r/o Scleroderma). I, too, have issues with "tender points" joint and muscle pain and weakness....however, although I'm an RN and actually teach patients about fibromyalgia (and completely believe it's a valid medical condition), I've never thought I had it personally. Other than the pain (as if that's not enough!), I had no other issues (no sleeplessness, brain fog, IBS, etc.) which are very common associated conditions. I was also told I had Lyme Disease (back in summer 2004), and still test positive for antibodies when ELISA tests are done...but my rheumatologist said sometimes the Lyme antibody test can be false positive when there is autoimmune disease present. Has anyone had this happen as well? Great topic! Stef
  12. Sclero Antibodies

    Hi Mando, First let me start by saying I can understand your frustration (as well as I think everyone else on this site!). Many of us have been sick for years, and many have never been given any answers (or complete answers). My own personal experience started about five years ago now, and I've finally started to get some answers. I found many symptoms emerged first, long before my bloodwork started to show "positives" for antibodies. My bloodwork showed reactive/positive for AMA (anti-mitochondrial antibodies, liver specific) first back in 2007 after several tests I had done to try to figure out my severe GI issues, then several months later, I finally showed a positive ANA. Recently my bloodwork shows positive antibodies for SCL 70. I would also say to be forewarned as many people have inaccurate results when antibodies are tested. Two of my doctors explained I should have had a positive ANA way back when I showed I had a positive AMA (as a positive ANA test shows in general you may have antibodies possibly indicating autoimmune issues, where AMA antibodies are more disease specific, just as SCL 70 is more disease specific). I've been diagnosed with PBC (Primary Biliary Cirrhosis), Systemic Lupus, and now potentially Scleroderma (will see a Sclero Specialist Feb 4th). My symptoms all overlap each other, and I think it's very difficult for Doctors to determine which symptom is from what problem, at least treatment for all these things are similar. Physically, the fatigue, muscle and joint aches and pains, finger swelling and stiffness, "red spots" on my skin and tongue, GERD issues, digestive and bowel issues, etc., have been going on since at least 2004. I thought sharing this might be helpful. It's been a long journey for many, and a continual one for many as well. Thinking of you, and wishing you well. Stef
  13. Gi bleed and cellcept

    Lizzie, I'm new here, but I wanted to offer my support and wish you well. Hope you are feeling better soon! - Stef
  14. Miralax

    Sweet, I love the humor! I've taken Miralax before, both in large amounts (as a prep for a Colonoscopy), and as a gentle laxative. For general purposes, you usually mix a small measured amount in with 4 to 8 ounces of a beverage. Taking it in the morning should be ok, as it seems to work more naturally with the water in your system to help keep you regular. You may, however, want to try taking it the first time when you don't have plans to be out anywhere, just in case your results are more immediate? Hope this helps! I found there are very few liquids I can drink prior to bed, as I run to the restroom the rest of the night! - Stef
  15. I'm very pleased to report I called this morning, and have an appointment with Dr Thomas Medsger (one of the listed Scleroderma Specialists), at the Arthritis Clinic in Pittsburgh for February 4th. I hope he can help place together the pieces of the puzzle for me, and provide much needed answers. Thanks to all, again, for the support. I'd be lost without you! - Stef
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